Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, August 13, 2010

My son loves technology as do I. However, we radically depart from one another in how we perceive that technology is used. Like many anthropologists, I think technological innovation often takes place before a society has learned how to incorporate new technology into its social structure. There is as a result a struggle to appropriately use new inventions for members of society. This was true thousands of years ago and not much has changed. This thought came to mind when my son sent me an article from SlashGear.com about a robotic wheelchair that uses sensors to follow people. Yes, the wheelchair follows the mighty all knowing bipedal people who know the way. This is very Wizard of Oz and Yellow Brick Trail minus the Wicked Witch of the West. This technological breakthrough was invented at the Human-Robotic Interaction Center in Saitama University, Japan. The people that run SlashGear.com may know a lot about technology but they don't know anything about people who use wheelchairs. Not the use of the word use here--I use a wheelchair. It is an empowering technological device by itself (no robotics needed). But to others, like the people at SlashGear, robotic wheelchairs that follow bipedal people are "a great way for helpers to help those confined to a wheelchair". Wait, it gets worse. The robotic wheelchair is a "great idea" because "a wheelchair bound person's companion usually has to push them around, and therefore if something comes up where they need immediate assistance, they may not be able to get to them fast enough. But having the wheelchair follow them, and therefore freeing up their hands, makes that assistant all the more helpful". And, yes, amazingly it gets even worse! "And thanks to the distance sensor, the wheelchair can avoid not only stationary obstacles, like chairs and desks, but also people".

Wow, where should I start. The robotic wheelchair assumes a stunning level of dependence on "helpers". It is assumed that a person who uses a wheelchair needs help at all times and that help must come fast. The person that uses the wheelchair can never lead his or her bipedal companion, oops, I mean "helper". Again, this assumes the bipedal person will always lead the way. As for the distance sensors, I am sure bipedal people can now rest easy knowing they will not be run over by roving hordes of "wheelchair bound" people. I never knew I was so dangerous until I read about these life saving distance centers.

Excuse my sarcasm above. I put the robotic wheelchair up there with the human exoskeleton for paralyzed people in terms of silliness. The robotic wheelchair is a classic example where a technological innovation is designed to meet a perceived need that does not exist. I can think of many things about wheelchair use that could be improved but it does not include any devices that highlight dependence rather than independence. And this gets to the heart of the problem. I see my wheelchair as a powerful tool of empowerment. I truly love my wheelchair and know that without it my life would ground to a halt. Crawling is just not an option. Yet few people who do not use a wheelchair think the same way as I and others who use a wheelchair. No, for most a wheelchair is bad, very bad. Great efforts will be made to get a person walking and I will readily admit it is the way we humans were designed to move. But not all humans can walk nor should they be pressured into thinking a wheelchair is inherently bad. I have spoken to many people who have told me how they wish they had started using a wheelchair months or years earlier. Their life was greatly enhanced by wheelchair use. The point is that we do not necessarily need technological innovations in terms of wheelchairs but rather a social revolution--one in which wheelchair use is seen as simply an alternate means of locomotion. I doubt I will ever see this social revolution take place. But who knows perhaps there is a geek out there that understands wheelchair use from a social and technological perspective and is working on a wheelchair that will radically alter my life. Why, I can even imagine myself as cool, envied by others. Now that would be a first!

Wednesday, August 11, 2010

Many in the disability rights community will have already have heard that Paul K. Longmore died. According to Longmore's Facebook page a friend posted that he died August 9, 2010. I am very upset by Longmore's death. Avid readers of this blog and my work will know I was heavily influenced by my former professor at Columbia University, Robert F. Murphy, author of the Body Silent. I deeply admired Murphy's scholarship. I don't get to write this statement too often though I wish I could. Longmore was another man whose scholarship and activism I admired. He was a scholar's scholar. Every citation I followed up on Longmore had referenced was correct. More than correct, the reference was well chosen and the quote perfectly apt. He was the first person in disability scholarship I read that seemed able to combine rigorous scholarship and activism--a requirement in my estimation for people in the field. Longmore also studied and wrote about disability history and I always learned something from his writings. It did not matter to me if the work he published appeared in Ragged Edge or Reviews in American History. I was always assured I would earn something new and original.

I sincerely hope Longmore's death will receive some public attention beyond the world of disability studies and activism. He was an important scholar and activist. I never met Longmore in person. However, when I was stuck on a complex and controversial issue I was writing about I would send him an email asking for help. Longmore always replied in detail and with obvious concern. He was in my estimation a giving scholar, willing to help others. We scholars tend to live in isolation but that I suspect was not Longmore's way. He was out there as my son likes to say about people who fail to conform. Last night as I fell asleep I took out one of Longmore's books and read various passages. The book I chose was my favorite--Why I Burned My Book and Other Essays on Disability (2003). I came across one passage I have read, reread, and highlighted with multiple stars and exclamation points. Hence it seems somehow fitting to end this entry with Longmore's own words:

"I have long believed that disability experiences can supply tools for a profound analysis of modern cultures in general and American culture in particular. The very features of disability that have caused those cultures to devaluate people with disabilities so fiercely can provide disabled people a degree of cultural--and moral-independence, clarifying distance of outsidership. From the perceptual advantage of that position, disabled intellectuals could formulate a distinctive critical inspection of contemporary societies, disabled people could fashion a distinctive set of values rooted in disability experience that could serve as an alternative to dominant values".